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I have been lurking on these forums for more than two years and feel like I almost know some of you based on your posts. I am a PhD candidate in Social Psychology at Loyola University Chicago studying HIV-related stigma and disclosure (to family, friends, etc.). My research interests shifted, in large part, as a result of finding and following The Poz forums; what I have learned about being HIV+ from you has been invaluable.

I am collecting data for my dissertation on disclosure (to non-sexual partners) and would be (forever) grateful if you would share your thoughts and experiences with me. The survey has been approved by Smart and Strong (The Poz) and is open anyone 18+ and HIV+. The survey should only take 15-20 minutes. Your responses will be anonymous (confidential) and you may skip any question you do not feel comfortable answering. I plan to update you on the progress of the project periodically. If you have any questions please feel free to contact me.

Thanks to the help of a kind forum member, it has come to my attention that VL was not collected/tested when LTS were diagnosed. For any LTS who still may want to take the survey please leave the question that asks for "VL at diagnosis" blank. I will be sure to make note of this (and adjust it) once I have completed data collection. I am sorry for the error and any confusion it might have caused.

If you would still like to participate the survey is open and your participation is greatly appreciated

The question on most recent viral load might need a bit of an explanation of how you want that answered for undetectable levels. I gamed it by putting 19 as my results are <20/ undetectable, but others might drop the survey if their answers keep rejecting.

some of those first questions about how did it go with your first disclosure to your partner did not have good answers.

while the act of disclosing to my partner that we were both infected was the most awful thing to ever happen, he was not awful about the disclosure.

Your choices were awful, bad, positive, excellent (or something like that) which actually presupposes quite a bit about what the researcher expects the answer to be. There should have been a neutral choice and a "does not apply" choice.

there wasn't a viral load test until I was in the hospital the second time with PCP, so I couldn't answer that question; and although UD, I simply put down 20.

I thought the survey was poorly written and conceived. It seemed obvious that the researcher compiled it with little or (more likely) no input from anyone in the positive community.

Leatherman pointed out one example, but there were many questions where the answers, to my mind, presupposed an awful lot, and from a very obviously hiv-negative person's point of view.

It's a very nuanced subject and the survey did not allow for those nuances to be expressed. Many of the nuances do not come to light or become obvious until one has actually lived with hiv - hence my belief that there was no input from any positive people during the compilation of this survey.

I really can't see this survey garnering much, if any, useful information where this subject truly relates to the real world.

That's my opinion (and my opinion only - I'm writing this as a person living with hiv, not as a forum admin), for what it's worth.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I thought the survey was poorly written and conceived. It seemed obvious that the researcher compiled it with little or (more likely) no input from anyone in the positive community.

spot on, Ann!

the two longer pages that combined actual feelings with subjective feelings was confusing. I couldn't tell if I was taking a survey that was trying to get to the root of how an HIV positive person feels or whether I was taking a psychological test that was going to tell me what "type" personality I had when I was finished. As a type "B+" person (well maybe an "A-" LOL) often those traits of my personality don't match up with how I feel and act now that I'm an HIV positive person (especially as one who has also had an AIDS diagnosis and had been sick/disabled/physically impaired for some years)

Leatherman, I would guess that one of the things she is looking for is any relation between personality type AND various indicators of what she has decided to measure about living with stigma, and disclosure experiences.

I agreed with ANN - i could imagine what was being looked for and found it limited and biased, while taking it. But decided not to say anything and specifically thought, well, at least its a start for this person, learning how to do such things in her career, academic or otherwise...

I got a very extensive survey from the state hospital which is attached to the state university, when I seroconverted. Same old complaint. I could tell NOBODY HIV+ had anything to do with it. And from both academic and health professionals who should know better. I was just a couple weeks HIV+ and knew the survey was off-kilter.

It it was it is.

I think having HIV, and learning to llve with it - health wise, socially, legally. Just tends to make our consciousness / awareness / critical thinking - a bit pushed along... And its pretty easy for a standard survey type questionnaire to fail to keep up. Just as so many many articles in the media, about HIV, living with HIV, HIV+ people, are just sort of meh....

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Ouch! I apologize to all who were disappointed with the survey. I also understand that survey research cannot capture all of the nuances of what living with HIV is like or even a disclosure experience. The survey is an attempt to build upon "a line" of existing research, not to uncover or understand the entire phenomena of disclosure. I agree it would be nice to do but it is virtually impossible to do in the real world for a variety of reasons. Many of the items on the survey were not written by me, but are measures or pulled from measures "validated" by previous researchers.

I am trying to understand some specific facets of the disclosure experience AND I do sincerely care about eliminating and/or reducing AIDS-related stigma (disclosure plays an integral role in stigma reduction as well other things like proper education etc.).

I am hurt by the harsh comments because my intentions were good... but I am happy that you said something.

I would like to know what, specifically, I am missing/not understanding so that I can address this when I write the limitations section. On a more global level I would like to know (get specific guidance), so I can (help) redirect literature on HIV disclosure so that it does reflect the reality of people living with HIV, instead of imposing a reality. Like I said previously, most of the measures used here are used by many other researchers in the social sciences. So, if they are misconceived/poorly-written and the results are completely useless then a lot of literature on this topic is also pretty useless. No matter what you might think of me, I do care about getting this right. And I care developing questions or measures that can tap into your reality and not researchers beliefs about what is real or important.

You may look at the survey via the link below. It will ask you about "consenting" just hit "yes" and then you may move through the survey without answering any of the questions. This is a separate link so it will not affect the completed surveys.

The purpose of this study is to measure and understand the impact of first disclosure experience and internalized stigma on subsequent/future disclosures. We are also interested in the relation between the pattern of disclosure, social support, and health indicators, such as CD4 numbers. We hope that a better understanding of these processes and relationships will lead increased HIV education and a reduction of HIV-related stigma.

9) add: depends. “mixed” results (some good some bad)

10) as above

14 – what KIND of discrimination? You just need “all” discrimination, generally…? zzz

13) - “the HIV clinic” ?! How many of the survey responders does this scenario apply to? What is the reaction to this question, of all those who do not go to “HIV clinics” - to this loaded phrase?

17 - I had to guess years AND months. A lot of us do not remember such specific time frames. Especially after a year or two HIV+.

19 – already explained to you. Also, many of us do not remember and there is no way to enter a word answer to this question.

29 – most people who have had these opportunistic infections, some time in the past, but a few years ago – they may start to second guess why the survey thinks they are only relevant if within 12 months...

35 – is that really the best way to make a single binary division of all HIV+ people – “below” or “above” “poverty level”? Feels so limiting and like a stereotypical view. (But, we aren’t the survey experts, maybe that’s meaningful for your results….)

36 “below HS” sounds like “NO HS”. SO the next choice should be “some HS”…

_____________Not so much what is in the survey then as what is NOT in it.

You say the survey measures, besides 1) first disclosure experience, 2) “internalized stigma” and both of these as effect on 3) “subsequent/future disclosures”:

2) Where is the rich questioning about “internalized stigma”.

More important: where is the rich questioning about genuine, social, legal, professional, and sexual/affective stigma, that we all live and experience over time?

OK, if you are ONLY interested in “internalized” stigma. But most of us have a developed discourse, and strategy, between our awareness of our own internal stigma and its relation to external stigma. Your survey seems to have pretty much ignored this data field. External stigma! That’s such an important part of the whole challenge.

Ok if your survey is mostly interested in data about the internalised stigma. And the "perception" of external stigma, which is not exactly the same as straight shooting questions to ascertain experiences of discrimination, hatred, ignorance, etc. Did I miss this??

2) Where is the rich questioning about the ongoing and complex experiences of disclosure that most of us live? Why have you decided 1st disclosure has such importance, and years of disclosure experiences short shift? I would guess many 1st disclosure experiences are rather arbitrary and unplanned, unchosen, etc. Good or bad, I'm not sure they often have all that much to say about how well people go on to live, well or not, HIV+, and how they disclose, and what stigma they feel. Internal or EXTERNAL. Seems to be basic, limiting design flaw of the survey... You do realise for many of us, any drama or trauma of a crappy first disclosure is fleeting...? And a beautiful one, or neutral one, can also be contradicted subsequently...

_____

Finally, frank question. Did ANYONE HIV+ directly contribute to the writing of this survey? Ok, many questions cribbed from other research, but you put it together. You realize there is always bias in selection, of course. What check did you do to counter selection bias, because of not being HIV-? Answer honestly, thank you. (Assuming you are HIV-, which may not be the case….)

Good luck with the survey. Hope you get the data and also hope it proves useful to the research field as well as HIV+ people.

« Last Edit: October 29, 2013, 03:36:23 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Sorry your hurt about the comments but you really should have some knowledge of the topic prior to creating a survey of the poor AIDS victims.

I went to grad school and based on the survey you posted you wouldn't have passed my program. How do you think you can stand up in front of an auditorium full of faculty and argue your research? Way to many holes. Sorry.

Look at it this way. Yes - get data about how HIV+ experience STIGMA but include external discrimination, prejudice, and hatred.Also - get data about how HIV+ experience ongoing disclosure. Ask followup questions to get data about the motivations and experiences and results of "ongoing" disclosure.

SO: A) STIGMA+PREJUDICEand B) DISCLOSURE OVER TIME

Then consider the fields. We have experiences for A and B in the following fields:

Example: You ask the importance a responder attaches to discretion/disclosure on the job. NO FOLLOW UP QUESTION. !? "Ever experience discrimination after a disclosure at work?" On the one hand, its a question of including our experience in the data collection. Creates good will. "We are not being reduced" (e.g. poor, or non poor)

ExampleDo you disclose to sexual partners?Question about our motivations, criteria to disclose to sexual partners. Then another question, data about the experience of such disclosure...

On the other hand, maybe you'll get at your original measurement goals with a bit more data. Even keeping the restricted parameters... OK, cause yeah, don't want the survey to take too long. I get the challenge. Got to limit it... But....

« Last Edit: October 29, 2013, 03:59:42 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

My main issue with the survey, is that it did not distinguish the amounts of stigma encountered, based on number of years poz. Those of us who have been poz for decades, faced a lot more and often brutal resistance, to our being poz. It does not mean that newer pozzies do not face the same issues, but I believe the "source" of those issues has changed over the years.

It used to be a really big deal to have AIDS and be gay, today, not so much, however, I think the change in how poz folks are seen today, is more a result of HIV having moved into the heterosexual community. While we still see resistance to equal rights for gays, the motivations have changed from being afraid of us, due to HIV, to the reality that the world is changing and being gay won't be much of an argument for anything in a couple of years.

I realize the survey could never cover all these permutations, however, it is obvious to me that no positive person had input into this survey. If they had, your questions would be better structured and yield more nuanced results.

I think a big issue here is the preferred methodology used in my field, and it does leave people feeling cold. The survey was designed to measure very specific variables in a relatively short format. Social Psychology is a very quantitatively-based field of research where findings are reported in aggregate meant to be 'generalizable' rather than in-depth descriptions of a process (like Sociology and Cultural Anthropology). These are areas of research where there is an emphasis on specific individual experiences and nuances.

I am just looking at the relation of a few variables, and often most of the measures are "borrowed" from other measures because they have been "validated" by previous researchers some of who are positive and some who are not. This is the case with this particular survey and this research. Your points related to "standpoint epistemology" are completely valid, I cannot know all that you know just from reading academic literature or reading forums like this-- so I apologize for lack of sensitivity or knowledge. The issues with depth are a limitation of a particular methodology and its reliance on large amounts of participants data rather than shortsightedness. I simply couldn't ask all the questions that you would have liked me to address.

So I am sorry if it comes off as insensitive or I am insensitive, I will certainly take all of your comments and criticisms to heart.

It's a very nuanced subject and the survey did not allow for those nuances to be expressed. Many of the nuances do not come to light or become obvious until one has actually lived with hiv - hence my belief that there was no input from any positive people during the compilation of this survey.

I really can't see this survey garnering much, if any, useful information where this subject truly relates to the real world.

Mary, I'm not offended by you but you must try to understand the above statement. I took the survey and when finished I thought "what in the hell good could come of it? Why bother? Get real.". I don't think you ever answered the repeated questions regarding if any input of the designing of this survey came from a pozzie. You now seem inflexible and defensive when you might want to take a step back and truly listen.m.

Yes, a few HIV+ people did view the survey and rationale for the survey prior to data collection. I did ask their opinions, but did not use a formal focus group. One thing they did have that you do not is the proposal or the theoretical basis for the study & why I selected the variables I did. I hesitate to post too much about the survey publicly because data collection is on going other places. I will post a link to the dissertation when it is complete so you may see it in its entirety.

I cannot try to understand and measure every variable related to disclosure in a single study so I chose to focus on a couple. I do not see this as the be all end all to disclosure studies, I see it as a piece of the of the puzzle. So maybe on it's own it doesn't mean much but when combined with other research (in my area as well as other academic disciplines) it does become important or valuable.

I am listening to what you are saying and I think it's critically important, because you all have insight that I do not have. Much of what you've said in terms of criticism will be discussed in the limitations section/ways to improve upon or expand upon a study. Part of the reason I wanted your feedback was so I could start to look critically about the way certain things are investigated by the research community.

I do hope this answers your questions. I will post back publicly in a few months to show you what has been done. If you have further questions I am happy to answer them privately since data collection is ongoing, but will not post publicly until then.

Again, thank you for your participation and your comments. Sometimes sincerity is not easy to discern through text, but I am sincere.

Your field has thoroughly documented the construct of stigma, and so for several decades.

As for HIV and Stigma, I got the impression there was a paradigm shift by 2005 and some of the validated measures developed in the 90's were clearly "valid" scientifically, but now yet inadequate due to the shift into the effective HAART (manageable chronic disease) era. But now 2013 you have dozens more papers, and effective dimensions based on valid measurements, again.

You all clearly know theres internal and external stigma challenges here (and "internalized" stigma by both HIV+ and HIV- populations.) HIV+ are the "target" but where is the data in your survey on the bearer of the stigma? Their motivated performance. Your field implies the dimensions of both - and whats more you, have the tools to measure, a good 10 years of tools. But doesn't collet the data.

Just seems like your particular survey ignores significant data on motivated performance by HIV+ people against stigma. And it rubs me the wrong way because leaves tunnel vision, walks the gaze back to apriori victim status among the targets, the victims, and "original" circumstances, and the internal. That seem as much picturesque constructs as a living behaving population. As mentioned above.

And no attention to bring into the data the motivated performance - the WHYs and acts -- of the stigma bearers - the HIV- people, who are 1 party in the "stigmatized" interaction." between pozzies/non-pozzies.

So what is your objective? A rote exercise to show you can do the quantitative research by the books to earn your degree? About one party involved, and only one dimension of that one party's stigma experience?

Or is it, as you have said in rationale, and in your messages now, in this forum, to contribute to stigma reduction.

As HIV+ people, this sole focus on our own internalized stigma, and our perception of experienced (external) stigma, is an open book and shouldn't be all that fruitful if you have social change goals...

You have got to include motivated performance by stigma barrers, and investigate the two parties in our interactions. Our Fight or flight. loss prevention (status, money, love, support), dimensions of control of the stigma interaction, because otherwise, lacking some of that, meh, you're jerking us off as well as your self J/O to get the PhD.

As for external stigma, performed by the mostly HIV- (though also with our subaltern group - poz stigma against other poz) stereotyping, negative attitudes, fear, discrimination, control out of fear or revulsion.... Address them, dear, and the data there.

« Last Edit: October 29, 2013, 09:41:43 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

After I read your opener..." I have been lurking on these forums for more than two years and feel like I almost know some of you based on your posts. I am a PhD candidate in Social Psychology at Loyola University Chicago studying HIV-related stigma and disclosure (to family, friends, etc.). My research interests shifted, in large part, as a result of finding and following The Poz forums; what I have learned about being HIV+ from you has been invaluable." ...which struck me oddly, frankly, I decided to give you the benefit of the doubt and took the survey several days ago. i thought yikes there are so many things I'd change. Now seeing others had similar reactions and are " disclosing" them to you I'm compelled to respond to your reactions and challenge you to make this a fantastic outcome for everyone involved and those who might benefit.

You cannot afford to be hurt nor apologize too much. You 'll not presume ever again to know a population merely reading website posts for two years. What would have been super-cool is if you had asked the site admins if they would enable you to enlist a couple of members for input and feedback to the survey development.

That opportunity is past but I see a golden opportunity for you to absolutely lay your soul bare to your advisor and committee and redo the instrument based on what tip of the iceberg you've experienced with us.

It would take guts, an extraordinary amount of work but what if you ended up with something truly valuable? Lots of people get their PhDs on stuff that doesn't do much but show one understands methodology and politics. What a novel thing you have happening here.

You have bright people of the population you seek and allege to wish to benefit and they're saying hey this could be better. Can you take an academic risk? Bust a move as it were and F--- preferred methodology and figure out how to get some fresh and helpful data?

Yup it will screw up your deadline (maybe) create more work (for sure) but the honesty and potential for good might serve you professionally and stun your committee members with your responsiveness and commitment to gathering meaningful data.

To inspire you to go the extra distance...you reported spending 2+ years readings our posts, doing so shifted your research ideas and now it will take a comparative smidge more time to take it to another level.

Best of luck no matter what you do. If you redesign it well, I'm sure we'd retake it and enlist others to take it for the first time.